Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Oprah - Let's Get Cd On Her Show


floridanative

Recommended Posts

teankerbell Apprentice
Hi. I just posted this link on the other thread about this:

Open Original Shared Link

It's the page on Oprah's site for e-mailing the producers.

Gina

Gina,

Your picture is HYSTERICAL!!! LOL

Hi All,

I am in. I will email the Oprah Show. So many people love and watch her and trust her. I live in a Suburb south of the studio in Chicago and I work about 15 minutes away from the studio.

My issues are not as extreme but the whole audience should be celiac disease/GS people!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 102
  • Created
  • Last Reply
ms-sillyak-screwed Enthusiast

Okay here goes -– I was on the way to take a dip in the pool last night and had the radio on. I listen to a FM talk radio station in south Florida. If any of you would like me to post their phone # so you can call in just ask. I found them when in the middle of hurricane Wilma. Callers can talk about all sorts of topics they do have a topic but they welcome you to call in and vent or simply chat about anything.

Last night they were talking about GREEN BEER. I thought what better way to bring up celiac disease but through beer on St Patty’s Day. The radio guy said “Caller what would you like to talk about?” I said, “Green Beer and something called CELIAC SPRUE!” They said what is it? So I said, “It is spelled C-E-L-I-A-C second word S-P-R-U-E it is a life threatening illness for some that has to do with gluten in food and drinks. And for all those listeners tonight out there drinking green beer, or scotch, whiskey and wake-up tomorrow and are sick not from a hangover they might just have a gluten problem too.” He asked “…what type of symptoms?” I said it (oh my God I have to reveal to the world I have steatorrhea diarrhea) for me it is diarrhea and I have seizures too. There are 3 million reported cases and many more millions are un-DX’s in the USA. For some people celiac disease can cause AUTISM, EPILEPSY, DIABETES, ANEMIA, DIARRHEA and it masks itself in many others.”

They asked what is GLUTEN. (One guy knew a good deal about it) I told them bread, pasta, wheat, rye, barley, oats and is in just about everything people eat and drink. We talked about all the alcohols that contain it, I mentioned Vodka is made from rice or potatoes, and wine is okay from grapes.

The radio commentator is smart as all get-out, he knows so much about so many topics or he typed in his news wire and it came up. He said – “Oh, I recall the family in Jupiter, Florida sueing a fast food chain.” He asked me if I eat in fast food resturants. I said “…we’ll yes, only one and I get the grilled chicken fillet

but no bread.” I spoke about cross contamination. How I learned that if the French Fries are fried in the same vat of oil that the chicken tenders or fish sandwish is in it will pose a problem.” Then he said, “Well I think that family sueing won’t have a leg to stand on.” My heart dropped. He went on, and he added “...that the company first said there was no gluten and now they are admitting there is. And the food companies will have to be more truthful now.”

He asked about what people can do about gluten. I told them there is no magic pill. He said, “Not [YET] but there will be. And it must be hard -- doctors they don’t believe patients. But the pharmaceutical companies are who will help in time when they realized the money they will make.” I agreed. We talked about food allergies and one of the otherguys mentioned the peanut kiss and I said yes it was deadly. He said that they found out it wasn’t from the peanuts, I said I did NOT hear that to be true.

I added “I believe grains are bad for us and are killing us as a nation.” He said, “I don’t agree with you. We are an obese nation from eating bad junk food all around.” I told him that he was entitled to his opinion, but if you look at the USA as in a broader picture, that the #1 thing we spend the most money in health care is not, cancer, heart, or other illnesses, it is digestive disorders it tells us we are eating the wrong foods and gains have something to do with it.”

He asked how it interferes with my life. I talked about my seizure and (Oh God here I had to reveal more) loosing control of my bowels. And I said I know your listeners don’t want to her me talk about my diarrhea problem. But that many people have this up to 12 years before they are DX’s with it. They thanked me for the education on the disease and welcomed me to call back and chat anytime.

While I was doing my lapps in the pool I thought of many more things I wished I thought to say. Today I sent daddyO to the library to order me the book about deadly grains. I’m going to read it and call back again armed with more statics

about it and SOY. I am also going to email them with more info about celiac disease this week.

If any of Celiac’s here in cyberspace would like to call in or email them just ask I will post the web site where you can listen to them online they also have a 1-800 # that is good around the country if you would also like address your plight with the disease or things I forgot you mighht know more about.

Well, Oprah is missing out. But little by little we will get the word out…

jerseyangel Proficient

Wow Ms. SS--That was great! Just think of all of the people you educated in that one call. There may have been someone out there who was looking for an answer, and you gave them food for thought. I know that here in NJ, there is a radio station that is all talk on weekdays--when I get up enough nerve, I want to call in and do the same. I hope I don't lose my nerve :ph34r:

And you're right about Oprah <_<

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - DayaInTheSun replied to DayaInTheSun's topic in Coping with Celiac Disease
      5

      Being a burden to family/friends

    2. - Kiwifruit replied to Kiwifruit's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Years of testing - no real answers

    3. - trents replied to Gill.brittany8's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    4. - Gill.brittany8 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      9 Year Old test results - help interpret

    5. - Mnofsinger replied to Mnofsinger's topic in Related Issues & Disorders
      7

      Food Tasting Salty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,834
    • Most Online (within 30 mins)
      7,748

    mcsmommy
    Newest Member
    mcsmommy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
    • Mnofsinger
      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
×
×
  • Create New...